Too risky or worth the risk?

muchlove

New member
My health has hit it's first major declines in the last 6 months where I'm spending more time in hospitals and the ER and have spent about 6 months on oxygen day and night. I started some rehabilitation therapy to help pull me off oxygen so I don't continue a downhill fall and can start compensating without 02. I am doing amazingly well during the day and continue oxygen at night. I have done better at work where I'm active my entire shift and in general daily activities. I used to be involved in tons of athletics like cross country, track, and soccer. I just sat out a while to deal with beig sick when it happened. The most difficult thing for me being really sick is feeling so trapped and not being able to escape and be active. Running and biking is what I really love and I feel so restricted not being able to go out. So my question is am I totally jumping the gun attempting to exercise? Maybe starting with a jog/walk depending on how I do during it. Could it be good for my lungs, and managing infections to try to exercse again? Or with the situation does it sound risky and detrimental to my health? I just want to run!!!! And my favorite 5k is in 2 months and I want to go even if I can't run it all! So I need advice. I would greatly appreciate any input or suggestions on regaining my health and abilities! Thanks!
 

SIcklyhatED

New member
What have your O2 stats been like? I'd ask your doctor/rehab therapist what they think, because if your stats are low and you exercise too much it can go downhill very quickly. From what I've learned from a clinician standpoint if a patients O2 gets below 90 you should stop.
 

muchlove

New member
My most active times are at work and im staying between 90-95%
I've heard exercise can help improve functions, but I have many concerned friends who are advising against exercise. If it's managable can exerting improve my capability to handle exercise again, and help my lungs strengthen or am I just looking to go downhill and make the hospital stays worse? Running always helped me clear my lungs but if it can cause more damage to start again I would prefer to reserve my health. I'm just dying to get out and move! These are remarkable stats for me considering I had been in the 70 percent range without activity for a while but I want to work to improve it and not decline again so just want to get a feel for if this is a healthy step.
 

JustDucky

New member
Exercise is great for lung health, the stronger the muscles, the less effort it takes to oxygenate yourself. Just don't over do it and listen to your body.. If you are tired, pace yourself, don't try to do every exercise known to man in the same day. As with any exercise program, run it by your doctor to make sure there aren't any contraindications.
I know people mean well when they say exercise will only tire you out, that you should conserve energy etc....but in the end, that doesn't help your lung function. You mentioned that you ran, that is great airway clearance as is jumping on the trampoline, swimming etc. I know of people who are on O2 yet still run on the treadmill. You might want to check out Jerry Cahill's journey, look around on this site and you will find his videos etc of him exercising and advocating fitness. He is truly amazing.
Good luck with everything, stay active! (of course with Dr's blessing)

Jenn 40 wCF
 

beleache

New member
I agree w/ everything Jenn (justducky) said .. I am in a pulmonary rehab program & I love it ! So ppl in the program , If their o2 stats are low they use oxygen during the workout .. Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 

TarHeelBlue2007

New member
Exercise has been a mainstay of my CF management for years, and I regularly compete in endurance events (finished my second Half-Ironman this past May). I agree w/ the above posts...exercise acts to strengthen both the respiratory muscles and your overall physiology. The key is to not over-do it...when you're recovering from an exacerbation or infection, your body needs to devote more energy and resources to the immune system, so you may not have the same capacity for exercise. While a 10mi run is good for my endurance when I'm feeling healthy, it will only serve to break me down further during a flare-up...but a 3mi run works fine, and even helps me clear my lungs out.

My personal recommendation: during or immediately after an exacerbation, keep the exercise to 30min a day, and moderate intensity (if you did the exercise before a round of nebs, you shouldn't feel too tired to do the nebs). Good luck!
 

imported_Momto2

New member
I agree that you should do the most exercise you can tolerate. So often, this critical aspect of CF care/management is ignored. Talk to your docs, monitor your stats, and go for it!
 

LittleLab4CF

Super Moderator
I join the chorus of those recommending exercise. I am an old man of 62, old in CF terms. My late diagnosis at 51 left me especially vitiamin deficient and the worst consequence has been big time osteoporosis that has affected ever bone in my body, including my teeth. I have talked with several professionals about what I can do to arrest or improve my bones. I realize this is not your central complaint/concern but after hearing several people weigh in on bone health and my overall health in general comes down to one word: WALKING. Its benefits for CFers are considerable and in many areas also problematic in CF. You have heard plenty on pulmonary improvement, but add bone maintainence, aiding in food transport i.e. constipation and toxic accumulation associated with low intestinal and bowel motility, add possibly a walk and talk with a walking companion and the total effects add up to way more pluses than not.
 

imported_Momto2

New member
Hey littlelab, regarding the teeth comment, you'll like this! I was flossing last week, got the floss stuck, pulled it out and fractured a chunk of tooth clean off a molar!!!!! yummy....................

Gotta give another thumbs up to the walking. My second workout of the day is usually a half hour brisk walk on 12-15 degree slope (treadmill) while doing HTS. Does wonders for the body.
 
P

pencf

Guest
Muchlove,

How old are you? Some of what you are saying about your life right now seems pretty similar to my daughter with CF (17). Won't go into the details but pretty similar!
Anyway, I would NOT recommend you jumping into the 'old' routine of Biking and Running without going to Pulm Rehab first. You will be there with a lot of older folks (COPD and such) but at least you can be supervised while working out (Treadmill, stationary bikes, stair climber, etc). They will watch your saturation levels as you try more intense works outs. If you end up needing o2 to Run, like Jerry Cahill did for all those years, well so be it, its still a work out and still will be good for you and your lungs.

Good Luck. Keep me posted!

Bethann <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mom to Patrick (almost 21, ugh and no cf) and Madeline, 17, with CF and sleeps with o2 (and her fair share of bugs)
 

muchlove

New member
20 in September. I've started my rehab but the therapist i've been scheduled with seems very inexperienced so the appointments are kind of a joke. I feel like the longer I sit stagnant though the farther I decline. I did try to go for a good walk yesturday and it wasn't an easy one but I do have soupy lungs right now. I recently started with an adult pulmo who wants to decrease my vest treatments and replace them with acapella/flutter which was an awful idea. So to cut it short I just want to feel healthy again and I know avoiding activity just makes me feel worse as I continue to struggle so I want a healthy and safe balance of exercise to build some strength back. Exercise has always helped me eat better too which allows me to keep a little weight on and I'm getting pretty scronny since I'm really only managing 2 good meals a day. I'm tired of actually feeling sick! I want to get out!
 
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